Tuesday, November 13, 2012

The Lymphoedema Society of South Africa?

Cut my finger this evening. Stupid. My fault. Have a paper knife used to cut newspaper articles and had brought it home from work to clean it. Stooopid. Was also packing away washing, then gonna change and rush to yoga. Knife cut into my finger. Panicked. On THAT HAND, the hand at risk of lymphedema or, as it is spelt here in South Africa, lymphoedema. A bad week for this - as my arm was up in three places on Monday and going back to see The Lymph Lady again next week.
Went to a local clinic. It is next door to the local pharmacy so decided I was being bloody ridiculous and went there to ask for "the stuff that sticks cuts together".Then pharmacist said I should get stitches as the steri-whatever wouldn't work on my finger tip.
Off I went. Fab doctor. Young. I explained to her that whatever she did, she couldn't give me an injection on that hand. Told her why. Besides the fact that she didn't ask if the blade was rusty/dirty (it was filthy) and should I maybe have got an anti-tetanus injection, she knew about lympedema but seemed ignorant re the causes. Seemed to think the chemo caused me.
Now I was feeling a little embarrassed at my over-reaction to what she said was a superficial cut (but it had been bleeding profusely at home, plus I am dressed in white from top to toe today and was conscious of not getting blood all over me), when I came home I thought: that is it. I am going to start South Africa's lymphedema society. There isn't one.
And I want to educate people.
Let's call her Tolly, from my bookclub, had a lump removed, chemo, radiation. Oh she had the chemo first. Then the surgery. At some point she was going overseas for work, and I told her to see The Lymph Lady so that she could get a compression sleeve for the trip as the long-haul flight could make her arm swell.
She phoned her, arranged to get a sleeve. Then some time afterwards, she made an appointment to see The Lymph Lady. It transpires, so The Lymph Lady told me, that Tolly came for some education, to find out what to do. Her arm was measured and lo and behold, she has lymphedema and now wears a compression sleeve permanently.
She said she had had blood taken from that arm since radiation.....and I know she wore a backpack when travelling and didn't follow all the 'rules' like I do.
Now she is an associate professor, hardly a fool.
The truth is that people in South Africa do not know about the threat of lymphedema or what to do to help prevent it, who to see if God forbid you do have it or are under threat.
I live in fear of developing lymphedema and am soooo vain I now realise. Have said I would kill myself if had to wear a compression sleeve and already apprehensive about possibly going overseas next year and anyway my arm right now is kinda f.... so......
Well, didn't want to make this anxiety a feature in my life, didn't want to think about it any more than I already do, with doing manual lymph drainage massage twice a day, but think I need to create awareness. And as a trained teacher (who no longer teachers) and a former publicist, have the means to turn this into a reality.....

24 comments:

  1. Hi Gillian, I hope your arm will be alright. I have to admit that I am not careful and it hasn't been a problem for me. My surgeon said that about 15% of women who have had lymph nodes removed go on to get lymphedema. I used to worry but I don't anymore. I do wear a sleeve for flying but I carry a heavy backpack with no ill consequences. I don't do any manual lymph massage but I used to. I have had lots of cuts and I really have never had a problem from that. I had my nodes removed from both sides so there is no good arm for blood draws. I guess I am lucky and I hope you will be as well.

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    1. Yes I do feel lucky as my arm is fine. Gonna write a short post re it now. I had no lymph nodes removed but had radiation. My cancer was in my lymph nodes (2) - I had no tumour, well, no primary tumour. But it was breast cancer.

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  2. Hi Ladies. i am a 26 year old female from cape town. i have leg lymphadema in my left leg. i have two kids and first time was four years ago with my first preagnancy when it was discovered. i went for lymph drainage... did the bandage thing ... and even bougt the stocking... and its still is my everyday problem. i hate it. i cannot go into a shop and just choose a shoe... i first have to get something that fits the affected foot, then i can take the shoe.
    its been 4 years now, and i dont know what to do anymore, because in south africa we dont have support groups and lympahdema stores that focusses on this disorder.
    i am now about to purchase a product on the website called " the lymphedema store" tablets... "lymphadema AM" just because im tired of this struggle. if you can help me in any way.. i will appreciate it... regards Riefqah - cape town

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    1. I would not bother with over-the-counter meds. I spoke to my Lymph Lady, as I call her on this blog. She really is an expert but she is in Joburg, where I live. She has suggested you contact Vaunda Parsonage on 083 6805464 or Isla Muhl on 0726649702. Say Jennifer Blenkinsop has recommended them. I hope your problem gets resolved or at least eased in some way. Best of luck and let me know how it goes. Sorry cannot chat more now 'cos at work.

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    2. There is no cure for lymphoedema, it is a chronic disease.

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    3. Hi Anonymous, I am a LE therapist in Durbanville please contact me in June as I am in USA Missouri with Dr Jane Armer at the moment. Would like to be of assistance...Great things coming to SA and there already Thea van Schoor 021 9769227/0824427694..Both the 2 therapist named above are great too

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  3. I have seen amazing results with Dr Dorothy Boshoff her practice is in cape town northern suburbs close to cape gate medi clinic tel 0218022861 or 0845153612

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    1. That is good to know. What sort of Doctor is she?

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    2. Thank you for the contact details of people that can hopefully help me too. Have swollen feet since the age of 9 and I’m 33 now. Have been to various GPs and physicians and it’s frustrating to be told that I’m in perfect health when my feet is obviously swollen. During summer time its worse as it feels like my skin can tear. I can’t wear shorts, skirts or anything that reveals my feet, otherwise I have to explain what’s wrong with it when I clearly don’t know myself. My feet was red and full of fluids in the beginning cause I would press on it but now it feels like its fat or its gotten harder, so it does not hurt that much. I’ve given up hope and have accepted that I will always wear shoes that fit and not ones that I would like to wear.

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    3. Thank you for the contact details of people that can hopefully help me too. Have swollen feet since the age of 9 and I’m 33 now. Have been to various GPs and physicians and it’s frustrating to be told that I’m in perfect health when my feet is obviously swollen. During summer time its worse as it feels like my skin can tear. I can’t wear shorts, skirts or anything that reveals my feet, otherwise I have to explain what’s wrong with it when I clearly don’t know myself. My feet was red and full of fluids in the beginning cause I would press on it but now it feels like its fat or its gotten harder, so it does not hurt that much. I’ve given up hope and have accepted that I will always wear shoes that fit and not ones that I would like to wear.

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    4. Please go to a lymphedema expert. Which city/town are you based in?

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  4. I all ways looking on the net for some help and turn to overseas,here in South-Africa we do not get help or any good information,how to treat lymphedema include our GP,In 2009 I have a radical mastectomy axillary dissections on both arms,while in rads treatment I got lymphedema in my one arm with a hive on my forearm swelling edeem and if not do my mld I got so sick,my medical insurance does not cover for a lymphedema pump to expensive,in the begin I was treat by a PhysioTherapist and it done more harm so I went and get me one who was trained and from overseas this guy knows what to do,I stop because my medical insurance does not cover this I pay 400rand plus to get there 400rand for one day and only a half our treatment out of my pocket 800rand.My arm swelling stays and leaks sometimes fluid comes out of my sweat glands on my forearm.

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  5. Hi. I am a 31 year old female currently feelimg like I am a 100 years old. I have primary lymphedema, diagnosed 2 years ago and I stay getting sick. My specialist just books my bed in hospital before I even arrive at hospital and he thinks that my mind is now converting stress into pain despite all my signs and symptoms. I am in excrutiating pain. My left side is a mass of swollen lymph nodes which i massage and a few minutes later they full again. I can barely stand as gravity is pulling and the pain is becoming worse. I am not coping in both my life at home nor at work and I dont know anyone else who has this illness who can actually relate to how I am feeling. I really feel like I am going to lose my mind with the amount of pain i am experiencing and medication is not helping. My entire left side is heavy, and painful. My left breast is huge and yet the dr says its going to get worse, find a support group and thats that. HELP!!!!!

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  6. Melissa, where are you based? I presume you are in South Africa, right? Not sure you are getting the right help. Do you wear a support sleeve? Have you been taught to bandage at night? I would like to help you get to the right person to help you. Email me at pumarine@gmail.com

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  7. Dear Lady's. Please have a look at the following technology called Vacumed. We have had fantastic results with the technology on Lymphedema and other algological diseases. http://www.vacumed.co.za/main/ Gustav Obermeyer gobermeyer@vacumed.co.za

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  8. Hello to all, Fellow sufferers in one way or another... I have a swollen left arm (and of course I'm left handed) from lymph node removal following breast cancer surgery. I have come to terms with wearing a compression sleeve every day - it helps and acts as security from cuts and bites. But I was wondering about those people who do not have access to having compression sleeves and who have to endure lymphodema unassisted. My thoughts have led me to trying to gather old sleeves or leg compression garments which would otherwise be thrown away from those of us who are lucky to have them replaced every 3-6 months. Could you let me know if you would be interested?

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  9. Hi I am based in PE, sometime in 2008 my sister got diagnosed with Lymphoedema (in her leg). Its quite sad to think there is no actual support system or group that one can contact for this conditions support. My sister has also been trying to get this condition put down as a chronic disease on her medical aid but its been a struggle. The treatment for this disease is very expensive and to go for a minimum of 3 massages a week for lymph drainage is very hefty and she hasnt been able to go for quite some time due to overbooking, and the fees. Do you know of any kind of support system/group that she can be directed to as we're kind of at our wits end.

    Thanks in advance, Shantall

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  10. Hi I am based in PE, sometime in 2008 my sister got diagnosed with Lymphoedema (in her leg). Its quite sad to think there is no actual support system or group that one can contact for this conditions support. My sister has also been trying to get this condition put down as a chronic disease on her medical aid but its been a struggle. The treatment for this disease is very expensive and to go for a minimum of 3 massages a week for lymph drainage is very hefty and she hasnt been able to go for quite some time due to overbooking, and the fees. Do you know of any kind of support system/group that she can be directed to as we're kind of at our witts end.

    Thanks in advance, Shantall

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  11. Hi Everyone

    I am going to travel in December 2015 to Saudi with my family. I need to know what would be the best compression stocking that for me.

    Please advise whether the doctor above is in Cape Town.

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  12. Hi, from Johannesburg. i suffered from last year august not knowing why my legs were paining so much and swollen, went into hospital in october the Specialist was just not interested,, then december he decides to do a test to find out if i have lymphadema, then march this went back in hospital wirh serious pain... My specialist at that time does not tell me he does not work with lymphadema i then found another Specialist that deals with this was admitted in june till july for treatment, then dr just discharged as he could not keep in hospital as he was not treating me... the physiotherapist was.... i have not done treatment since im at home as it is very expensive. i am trying to see in the government hospital if they do not offer treatment, yes i am also trying to get this conditon put on medical aid as chronic just having a headache with medical aid...

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  13. I am in Durban was diagnosed with lymphedema in 2007 somebody help me please :(

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  14. I leave in Namibia and South Africa is the closet country to me that at least offers some type of lymphedema treatment that works. I have swelling in my right leg, it gets worse with time and my doctor diagnosed it as primary lymphedema. It depresses me, and I have a hard time finding shoes etc. I need help? Like anything that works? :-(

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  15. Hi, if you can find a physiotherapist that is trained specifically for this condition, it will help a lot. Initially you will have to see her/him 2-3 times per week. She can teach you how to do the maintenance program by yourself after about a month. It includes wearing a compression sleeve from time to time and wearing bandages and do your exercises regularly.

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